Friday, December 28, 2012

Wrongful Birth / Wrongful Life lawsuits

   Throughout Emily's life, I was confronted by well-meaning folks who blamed Satan on her having Down Syndrome.  Since her death,  well-meaning folks have proclaimed that now she has a perfect body, that she has been healed of the Down Syndrome.  I say: Poppycock!  I don't believe that Emily was broken when she was born and I don't believe that she is fixed now that she has died. 
   King James 2000 Bible (©2003)
Before I formed you in the womb I knew you; and before you came forth out of the womb I sanctified you, and I ordained you a prophet unto the nations.


   I read this article this morning  and grieved over the evil in this world.    But as dismayed as I am when I hear reports on the news, they just serve to remind me that we ARE in the last days, and it's only going to get worse. 
   King James 2000 Bible (©2003)
And the brother shall deliver up the brother to death, and the father the child: and the children shall rise up against their parents, and cause them to be put to death.
   King James 2000 Bible (©2003)
Thus says the LORD; A voice was heard in Ramah, lamentation, and bitter weeping; Rachel weeping for her children refused to be comforted for her children, because they were not.

Wrongful Birth Lawsuits Wrongly Tell Kids: Wish You Were Dead

by Denise J. Hunnell, M.D. | Washington, DC | LifeNews.com | 12/27/11 5:11 PM

Imagine gazing at your child and coldly declaring, “You should never have been born.” Yet parents are doing exactly that in courts around the world as they bring “wrongful life” or “wrongful birth” lawsuits against doctors and fertility clinics.
These very sad cases are variations on the classic “wrongful death” medical malpractice suit. The twist is that the plaintiffs are dissatisfied because the patient — in this case a child — lived instead of died. Usually these children suffer from a serious disability or genetic disease. In a “wrongful birth” suit the parents allege that if they had been given a prenatal diagnosis of the child’s condition they would have aborted their child. They seek compensation for the care of their child and punitive damages for having to live with a disabled child.
“Wrongful life” cases are filed on behalf of the child, claiming that non-existence is preferable to living in a diseased state. In 1998, Amos Shapira argued in the Journal of Medical Ethics: ”… it would be both feasible and desirable to endorse ‘wrongful life’ compensation actions. The genetic counsellor owed a duty of due professional care to the impaired newborn who now claims that but for the counsellor’s negligence, he or she would not have been born at all. The plaintiff’s defective life (where healthy life was never an option) constitutes a compensable injury.”
Professor Shapira of Tel Aviv University wrote this over a decade ago. Since then, such lawsuits on behalf of children with genetic defects have become commonplace in Israel. The Oct. 26, 2011, issue of NewScientist magazine reports that the rising trend of these “wrongful birth” cases has prompted an investigation by the Israeli government. Israel, like much of the Middle East, India, and North Africa has a high rate of consanguineous marriages, thus increasing the incidence of genetic diseases. Carmel Shalev, a human rights lawyer and bioethicist at Israel’s University of Haifa, asserts the Israeli culture is geared to do prenatal testing and abort children with genetic defects. She states in New Scientist:
“There is an entire system fuelled by money and the quest for the perfect baby. Everyone buys in to it — parents, doctors and labs. Parents want healthy babies, doctors encourage them to get tested, and some genetic tests are marketed too early.”
In other countries “wrongful birth” lawsuits focus more on the hardships of the parents than the children. A 2009 case in England sought £1.5 million as a down payment on the care of Rupert, a 5-year-boy who was born with congenital heart defects, a cleft palate, a vertebral abnormality and a single kidney. Rupert is also wheelchair bound, requires mechanical ventilation via a tracheotomy and has a feeding tube. The lawyers for his family argued that because these abnormalities were not detected on the pre-natal ultrasound, his mother was never offered the opportunity to abort Rupert. She was burdened with his care and therefore deserved compensation.
A 2003 lawsuit sought damages because Down syndrome was not diagnosed prenatally. The Vancouver mother complained that having a child with a mental disability “totally disrupted our plans.” She was awarded $10,000 in damages for her suffering. In a similarly disturbing case, an Australian lesbian couple attempted to sue an IVF clinic because the birth mother became pregnant with twins when she only wanted one child. Their suit claimed the couple was “overwhelmed” with two children. The birth mother was beside herself because she had to buy an expensive stroller for twins and suffered nausea during her pregnancy. While this lawsuit was rejected by the Australian courts, the thinking that prompted such a claim is part and parcel of this increasingly prevalent view of parenting.
Throughout the world, children are dehumanized and treated as accessories in the lives of adults. With contraception, children are conceived when it is convenient for their parents. Abortion allows for “defective” children to be destroyed so that their parents do not have to deal with sickness and disabilities. In fact, a Danish newspaper headline announced earlier this year that a medical breakthrough would cure Down syndrome. In actuality, the proclamation was simply saying that prenatal testing and the subsequent abortion of unborn children affected by Down syndrome would be so thorough as to eliminate all live births of such children.
The advent of assisted reproductive technologies has allowed selecting a child to become even more precise. Embryos are screened before they are implanted. Those not of the desired gender or those with less than optimal genetics are discarded. In 2009 British doctors enthusiastically announced the birth of the first baby girl who had been screened as an embryo to ensure she did not carry the BRCA1 gene for breast cancer. In doing so, they implicitly denounced the lives of all women who do carry the BRCA1 gene. To these physicians, it would have been better had these women never been born.
When having a baby becomes an exercise in consumerism, it is not surprising that parents want some sort of money-back guarantee. When a purchased product does not meet the specifications that were ordered, we send it back and ask for a refund. “Wrongful birth” lawsuits are compensation for a “defective” purchase. “Wrongful life” lawsuits claim that disabled children are manufacturing mistakes. They should never have happened in the first place. Such thinking strips children of their human dignity and debases their parents.
Secular culture judges children by their usefulness to their parents. Such conditional love breeds distrust and insecurity. This socially destructive view must be countered with a culture of life that accepts the vocational nature of parenthood. Parents are called by God to be stewards of the specific human life given to them. Every child, no matter the state of his health, is conceived in the image of God. Every child also comes with his own set of challenges. There is no denying that some of these challenges are daunting. However, if God calls us to a task He will not abandon us. His grace will see us through if we have faith enough to trust.
LifeNews Note: Denise Hunnell, MD, is a Fellow of HLI America, an educational initiative of Human Life International. She writes for HLI America’s Truth and Charity Forum. This article originally appeared on Zenit.org.


Wednesday, December 12, 2012

2012 Annual Christmas letter

Dear Family and Friends,                                                            Dec. 2012

   Since 1992,  I've written an annual Christmas letter in an effort to stay connected with you all.   Half of my job as a nurse is to take care of the patient, the other half is to document that care.  It's interesting that I find that in writing my Christmas letters, I've documented the highlights of my life.  (if anyone happens to still have my '93 Christmas letter, could you send me a copy? I have the rest)

    My dad died in February.  My brothers and sisters and I worked together to clean up the property to make it ready to sell. We're still waiting for a buyer. During the process of sorting through their stuff, we learned alot about the lives and times of my parents. Even though the physical sorting-through is done, the emotional sorting-through continues. Grief brings the swinging of emotions that range from surprise to disappointment, understanding to sadness, loneliness to relief. It's exhausting work.

       Ray's book, "The Gateway to Hell, a Mike Shannon novel" was published in April!   It set a record for the number of books sold at a book signing at the Carbondale Barnes & Noble!  Besides the printed book, it's also available in e-book format.  Ray plans to write a series of Mike Shannon books.  It's just hard to find designated time to get the stories out of his head and onto paper.

    For several years, I've tried to write the book about Emily. But I share Ray's problem with designated time. So I started a blog! In it, I can write one memory at a time and get the feeling of "project complete" each time I post.   Here's the address:  http://heartlinesbyanne.blogspot.com/.  I don't write every day.  I write when my heart gets full and threatens to explode.  Maybe, one of these days the blog will become a book, but if not, it's just good to get it out of me.

     In September, Ray and I embarked on a new adventure!  Inspired by the TV show "American Pickers", we rented a booth in the Rend Lake Antique Mall in Ina, and stocked the shelves with items from our own house. What started as a shared fun hobby has grown into a full-time job for Ray. We are regular attendees at auctions, where we buy merchandise cheaply to resell at a profit. We now also have 2 booths and 2 show cases at the County Seat Antique Mall in Benton, where Ray works as a dealer/salesman.   Beside antiques, Ray focuses on baseball memorabilia and comic books. 

   In November, we got spectacular news from our daughter.  In May, they will be transferred from Minot AFB in North Dakota to Whitman Air Force Base in Missouri!  Instead of living 1200 miles (18 hours) away, Ryan, Tina and grandkids, Noah and Morgan, will live just a short 320 miles (5 1/2 hours) away.  We'll practically be neighbors!!!!

   Seth and Kristen and Kelly and Bob are working on the "living happily ever after".  All 3 of our children celebrate their 3rd anniversary this year.  Seth & Kristen's anniversary is on 12/12/12.  That is the very last ever repetitive number date in our current calendar. Isn't that fun?

   I'm still working in OB in Carbondale.  Twice this year I have been a "grand-nurse."  Meaning that the woman who I helped give birth this year was the baby that I helped deliver 20+ years ago.  How did I get that old?    
    Several weeks ago, I realized that I had busied myself through this whole year. Apparently that's my coping mechanism: 
Stay busy - can't think.
Stay busy - can't feel.
Stay busy - can't hurt.
Stay busy - can't deal.
Stay busy - can't heal.

   My New Year's resolution is to stop and smell the roses more often, to cry more often, to pick my projects carefully and to let "it" go - alot.  In next year's letter, you'll read about whether I was successful.  Until then,

                            
   

           Ray & I wish you simplicity, contentment, and true friendship during this Christmas season and the whole year through.


                                                  Ray & Anne        
 

  
  
  
  
  

Monday, December 10, 2012

ghosts of Christmas past


   At one time I fancied myself a fairly good photographer, but now I leave that to the professionals. I take pictures, (lots of pictures), to preserve my memories.  I look at pictures to conjure up those memories.  This weekend I spent time remembering the ghosts of Christmas past.

1st Santa, 1st Christmas

sweet temptation
 
notice that the tree is in the playpen, Emily still managed to eat a light
                                                             never afraid
 
 
                                       Emily & Seth, what a hoot, that pair
                                                
                           
                                                   Anne & Emily

The year she cut her own hair - Emily & Santa at school 
                                                    
        
 at the Annual Mileur Christas auction, Emily won this bid


    Memories are fickle things. They slide in and out of my consciousness, much like I image a ghost would enter and exit a room; sometimes invited, sometimes not; sometimes fleeting, sometimes lingering.  Often times the memories bring a smile, other times a tear and sometimes both. Sometimes they're as welcome as an old friend, and sometimes I'm haunted by the could'ves, would'ves, and should'ves. But they're always welcome because, whether the memories are pleasant or not, they're better than nothing.
   This will be the 6th Christmas without Emily, the 2nd without Mom and the first since Pop died. Although last year I put up decorations, this year I haven't and probably won't. I mourn the time- honored traditions that are lost. My heart is fragile again and mostly, I feel numb.  
    But as I write, I realize that I am not the only person who juggles the past with the present.  Each of us have memories that play in our head while we live in the present. 
   The Word says in Ecc 3:4:  There is a time to cry and a time to laugh. A time to grieve and a time to dance.   This message sets me free!  It allows me to remember and grieve the past, and yet, it gives me permission to celebrate the present.  This is the Christmas to make new traditions and to make new memories.
.

 

Sunday, December 9, 2012

Imagination & experts


When Emily was very little, I was told by one of the "experts" that kids with DS have little imagination and tend to sit listlessly unless stimulated. hmmmmm,   I guess Emily sure showed her.
That girl had a vivid imagination! She talked non-stop to her imaginary friends. We buckled them in seat belts, set their plates at the table, and waited for them to finish their turns. She was their teacher, their parents, their boss.
Each of these blocks had a kid face on one side.  These were her audience, her students, her friends.


Emily's favorite toy was a stick, any stick. I've seen a stick transform into a microphone, a baton, a crutch, a sword, a horse, and a musical instrument.   Placed on her shoulder, like a hobo, her stick held her bags. Oh and talking about bags.... Emily was a bag lady. She loved anything with a handle and regularly packed everything out of her closet.                                                                             
 
making noise (otherwise known as music)


                                                 
  She also loved to dress up.  To keep her out of my closet, I went to the local goodwill and bought an assortment of dress up clothes.   No imagination?

                                             


                                                        
 If the experts were right, then Emily was an exception.  But what I know now, they weren't and Emily wasn't.  I have met many kids with disabilities and have found that each has their own strengths and abilities that make them unique.  Exactly like every other kid.

   If I had to do it over again, I'd listen less to the experts and more to myself, less to the professionals and more to Emily.  I would spend less time chasing the elusive dream and desire for normalacy  and spend more time enjoying, appreciating the gift of her reality.

                           IMPAIRED
   She entered my life a broken treasure;
   My dream for a child exchanged for the nightmare of a diagnosis.
   The doctor's words cursed her life
   Sentenced her to be less than whole.

   But the 'who she is' becomes larger than the 'what I fear',
   And the verdict fades 'til I forget,
   I find it's we who are impaired.
   For lack of sight, we miss her gift.
                                 Annemarieke, 2003

                  






  

Saturday, December 8, 2012

The Christmas play

  From age 3 to 15 years old,  Emily went to school at the School for the Hearing Impaired in Marion.  The School services kids 3years old through 8th grade who are communication impaired.  Emily (and every other student in that school) participated in the annual Christmas play.
Bless the teachers, the aids, the secretary, the therapists, everyone who made this event possible for the kids and for their families!

   Having a child with a disability robs a parent of experiences that are otherwise taken for granted by parents of typical kids.  The Christmas play allowed me some of those experiences.  12 of those experiences, to be exact.   12 years I came to the school and watched Emily perform on that stage.  12 times watched her search the audience until she found me, and 12 times I heard her scream in delight "That's my mom!"   I wonder how many moms of typical kids have had that experience?
       One of these days, when we meet in heaven, I'll hear those words again.


Emily is the last kid on the right, in plaid - age 4


Emily's picture was in an article in the paper


Emily, 2nd from the right, just above the red cap


1st on the left, dressed as a present


2nd from the right, signing "stars in the sky"

                                                  far right - she found me in the audience!


In yellow.

 

  
  

  

Thursday, November 22, 2012

Thanksgiving past

   Ray and I remodeled an old house once.... and made it look older. We gutted rooms, tore out ceilings, spent our professional drywall budget on new wiring and learned how to drywall ourselves, but when we were done, it looked great!   
   Then we sold it, moved into a finished house and have had no home projects since!

An electrician's nightmare
 
Mud on




Mud off
  




Emily helps

Living room completed!
Thanksgiving, 2006
Our Family 2006
Emily, Seth, Anne, Ray, Christina and Noah, Kelly
              Little did we know that this would be our last Thanksgiving together. Lessons in life:  Treasure every moment.  Don't put off  till tomorrow what you can do today.  Make a memory.  Hold precious those you love.  Because tomorrow is not guaranteed. 

                                                   



















Wednesday, November 21, 2012

Balance

   A couple of weeks ago, I passed a rose bush.  It still had the remnants of a rose on it.  A jolt ran through me as I realized that summer was gone.  Sure, I'd done the summer things: the garden, the mowing, the sweating. But I hadn't stopped to smell the roses.  I'd  'busied' through another season.
  That was the great thing about Emily.  She saw the world through simple eyes.  My priorities are upside down in comparison to hers.  The "here and now" was what was important to Emily.  I spend my days getting things ready for the "what's next" and the "just in case" and I miss the present. I rationalize that someone's got to take care of business.
    Emily put the balance in my life. How I miss that girl.

Under a parachute with new friends
at a Girl Scout activity.

At the mall where Emily's class  signed songs
in American Sign Language. (Her primary language)